A Q&A with a Dedicated Patient and Family Advisory Board Member
Can you share an overview of your congenital heart disease (CHD) story and how you found ACHA?
I was born in 1983 with pulmonary atresia and had my first open heart surgery shortly after I was born, with the Fontan repair completed when I was three years old.
I was relatively asymptomatic for most of my childhood, but shortly after I turned 25, I began experiencing lower than normal (normal for a CHDer) oxygen saturation levels and low exercise tolerance, so I had a Fontan update. Up to that point, my CHD was not a part of myself that I openly spoke about and at times I even tried to ignore it. I became lost to care, through a combination of lack of adequate insurance and just fatigue from the seemingly endless doctor appointments, blood tests, CAT scans, MRIs, cardiac catheterizations, etc. In 2014 I moved to Texas from my home state of Connecticut, but it wasn’t just me—I had a family of my own, with an infant son who needed his father. So, I decided to re-engage with my CHD care. Not having any links to care providers in Austin, I turned to Google and found ACHA and their clinic directory, which helped me re-establish care with a CHD doctor in the area. Since that time, I have become increasingly more involved with ACHA, as a resource center and also as a support center.
Why did you decide to join the ACHA Patient & Family Advisory Board (PFAB)?
I decided to join the Patient & Family Advisory Board (PFAB) so that I could help with the important work of ACHA and—on a more personal level—I wanted to do what I could to help those like me who were lost to care, or were just feeling worn out. Having a complex CHD certainly takes a toll on one’s mental wellbeing, not just because of the obvious big picture issue of survival, but also in smaller ways. Complex CHD is often a major factor in considering employment (do they offer health insurance?), where to live (near a CHD hospital/clinic?), and how to live (could I or should I have children?). My membership in the PFAB allows me the privilege to offer my assistance and friendship to fellow CHDers and to penetrate the isolation that is often caused by having a CHD.
How have you been able to support other adults with CHD and their families through your work with the PFAB?
As a member of the PFAB, I have been able to begin the creation of a CHD community in my area (Central Texas/Austin) through hosting social events that bring CHD patients in the area together for support and camaraderie. On the macro level, I have been able to contribute to the Access to Care subcommittee and its effort to expand CHD care throughout the country.
What advice would you give to ACHA supporters about how to spread awareness and understanding of CHD in their local communities?
It is so difficult to get attention for an issue nowadays. There are so many worthy issues. For ACHA supporters, I think the best way to spread awareness is to discuss CHD and how it has affected them, both the good and the bad. The statistic of 1 in 100 is an important one, but it really helps to move from the statistic to the personal. Are you one of the 1 in 100? Do you know one of the 1 in 100? Share your story. I know that CHD is often a very personal issue, it was for me (still is), but there is a lot to be gained from sharing lived experiences. CHD is scary, but it can be made less so through advocacy and education.
To join Michael at a cookout he has planned in Pflugerville, TX, on September 23, click here.